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Sunday, February 20, 2011

The Remaining Sunlight

When I first started this blog, I wanted to find a way to tell my story and speak its harsh reality while still being sure to maintain a sense of hope and optimism. My primary focus, of course, was to raise awareness about how devastating and all-consuming ME/CFS can be, and to show that, though the name may be trivial, the disease most certainly is not.

However, I also wanted to emphasize that we are in no way defined by our illness. ME/CFS may ruthlessly prevent us from fulfilling many of our dreams, but it has clearly not taken away the dreams themselves. People with ME/CFS were once healthy, often extremely active individuals. We were going about our lives like everyone else when we just happened to fall ill -- typically quite suddenly from a viral infection, and certainly through no fault of our own. We desperately want to get well in order to have the privilege of once again living our lives to the fullest.

With these ideas as part of my focus, sometimes (particularly when I'm experiencing an acute crash) I wonder if I may give the impression I handle my illness and my circumstances with greater ease than I actually do.

ME/CFS is brutal. It defies description because it is so far beyond any normal experience of exhaustion or sickness. When faced with such a severe level of illness on a regular basis -- day after day, year after year -- one has no choice but to find a means through which to cope. Over time, I've learned to do this by focusing on the positive, maintaining my sense of humor, and looking within to seek out the small moments of grace. I resolved early on in this battle that I would not let ME/CFS destroy my spirit in the same way it had destroyed my body. And on most days, I do this quite well. My spirits remain strong, determined and hopeful.

However, as anyone would, I have a harder time during a setback. As I have previously stated, it can be quite a challenge to remain consistently optimistic when you feel so sick you can barely move. Not impossible, of course, but difficult.

I recently suffered another long-standing crash. This is my life in the last 14 years, and the nature of this unrelenting disease. Just when I feel like things are improving, I make one wrong move or reach too far, and I am back down again. It's like continuously taking a step forward and then falling a hundred steps back.

While my resolve holds firm, I have to be honest in saying this kind of life can test the extremes of one's endurance at times: the constant battle, the repeated setbacks despite your best intentions, the lack of answers, lack of treatment, the misunderstandings, and the countless downfalls from one wrong movement or one tiny misstep.

I once equated the experience of ME/CFS to what I imagine it would feel like, at least to some degree, to be in an abusive relationship. However, I would presume that a child who gets brutally beaten every time he/she reaches for a cookie eventually learns to stop reaching for cookies, or to seek out other means so as to not get caught. But what if your abuser (ME/CFS) never, for even one second, leaves your side? And what if your cookie is washing your hair? What if you get beaten over and over again just for trying to get out of bed? For getting dressed? For speaking?

When punished so severely and repeatedly for such minor activity, I can't help but get discouraged. As my fellow ME/CFS blogging friend, Alexis, described in one of her recent posts, I too tend to go through stages. The first is anger and denial. After fourteen years and what has to be literally hundreds of setbacks, I am still shocked when it happens. Somehow, I continuously convince myself that each crash will be the last, and that things can only get better. And then I reach too far beyond that invisible line once more, and my health plummets yet again.

At its very worst, I have been barely able to move. I have had more days and nights that I care to recall where every breath felt agonizing; where I could feel the energy it takes just to swallow. The experience can be beyond brutal. "No," I think to myself when it first hits, "this is not happening to me again. I cannot face this yet again."

After awhile, I have no choice but to move into acceptance, and attempt to find new adjustments and changes to help lessen the severity and duration of the setback as best I can. Once the agony lifts even slightly, I am so relieved to be remotely functional again, to not be in almost intolerable physical distress all hours of the day, that I am able to find some grace in that, and thus return to a place of gratitude once more.

Things are thankfully a little better than when this crash first began, though I am still in the process of trying to bounce back. In light of the fluctuations in my health, as well as some possible upcoming activity that will no doubt require all my energy, I've decided to take a step back from blogging for a little while and try my best at taking my own advice and learning to be more patient with what is.

Blogging has been an amazing experience these last (almost two!) years, and I am so grateful for the improved cognition that has allowed me to participate in a bit more online activity. I feel especially blessed by all the amazing people I have met as a result, and the wonderful friendships I have been able to form. The many letters and comments I have received over the years have touched me deeply, and they inspire me to keep writing. However, at this time, I feel I need to focus more fully on my health. I will still be around here and there, just perhaps not as frequently for awhile.

For now, I will leave you with a few photos of some of my most recent bird visitors (click on the photos to enlarge them). No matter how bad things get for me in my small world, I am always so grateful for the song that exists in theirs. They remind me to keep singing even if my song must currently be silent, and to stay focused on what sunlight still remains to me.

I really will miss you. Your blog has been an inspiration for me - because of what you said - how you are able to not let this disease steel your hope. I hope this break does give you that little bit of an energy boost, or spare energy for something else like healing. Come back and visit when you can - and take care. (Hey I wish there was a way to privately give you my email in case you ever what to chat).

You have been such an inspiration for me. Initially I started a blog to keep my friends posted, but gradually the advocacy work took over. I justed wanted to let you know that sometimes things can get out of hand and with this disease it is a blessing when you are as wise as you. Knowing when to stop. Prioritizing.

I wish you all the best and thank you for what you have meant for me and all the other patients. I will sincerely miss you, more then I can say right now.

You deserve a break from blogging even if you weren't ill! You have done such a fabulous job on it and have worked so very hard in your conscientious writing projects lately!

I will miss you too. I always read every word you write. You are a beacon in our community, Laurel.

The bird pictures are awesome! Hummingbirds are my favorite and I have a special connection to them. We have Falcons in our neighborhood regularly!

I always wonder what your diet is like, Laurel. I am experimenting myself with what foods might be contributing to any ailments I have. I am hoping that if I eat differently, some of my symptoms will lessen a bit. I try to research the best supplements to take also. I can't believe how much MSM has helped me over the years for example!

Thanks for the support and kind comments, as always! I appreciate them so much.

Upnorth -- I had my email up on here for awhile but I started getting too much spam! I may add it back up again later. For now, you can find it in the comments section of my last post. :) I'm not always able to respond but it's always nice to hear from people.

Judy -- I feel like I've been on every diet known to man in the last many years. :) You can see a list of just some of the supplements and diets I've tried here:

http://dreamsatstake.blogspot.com/2010/02/treatments.html

or by clicking the "treatments" tab bar above. I've tried MSM before as well. So glad it's helping you!

Dear LaurelWe will miss you so very much, but are behind you 100%. Your wisdom here inspires all of us...stay in touch when you can. We look forward to your return when the time is right. Keeping you in prayer.

Usually with a post like this I want to read it and think about it awhile before I come back and comment, but I've learned that nine times out of ten when I do that it never happens. So I'll just say that once again I thought this was a really good post. With good analogies (And what if your cookie is washing your hair? !) Love the bird pictures. My boyfriend got me a Birds of Los Angeles guidebook for Valentines day. Sadly, since two trees fell in my yard there are a lot less birds and squirrels around, but I still see some out my window. I'm anxious to start checking them off. Enjoy your well deserved break from blogging.

Alison

I also worry, by the way, that I give the impression on my blog that I handle things much better than I do. I'm more afraid I give the impression that my quality of life is better than it is. Oh well.

Laurel -- I could so relate to everything you said. This disease is so dreadful in ways that cannot often be described. I'm amazed at how you keep your spirits up and will miss your posts while you are away. I support your need for a break though -- I hope it allows you to rest well. I loved your photos! The falcon is beautiful. Loved the finches kissing too. I will be thinking of you and wishing you great things, Laurel. You are a bright light for us with your strength, advocacy and courage.--S

Laurel, your words touch me like no one else's do. It's after reading your blog that I decided to start my own. I wanted the people in Germany who don't speak English to feel the way I did when I first discovered your blog, and again with every new post.

There are very few things that can ease this terrible burden for a while, but feeling understood is one of them. Your words always make me feel that way, even if we don't talk. I will miss your posts while you are gone, but you will never be gone from my mind, while every day I continue to hope that the day will come when we can have our cookie and not be punished for it.

Thank you for making me laugh, for making me cry, but most of all for making me feel understood.

I'm upset (for purely selfish reasons) to hear you won't be blogging for a wee while, i'll miss your wonderful posts & you will have disappeared & I won't know how you are! But i get it, the need to step back, to take a break and just concentrate on you! And that is not being selfish, that is sensible especially in light of your recent crash. I will miss you soooo much but know you won't be far from my thoughts & am wishing you a lovely complete rest to enjoy those fantastic birds outside your window & recharge in the best way you can. Will look forward to your return! xxxx

I had a really strange experience reading this post. It was like reading something I could easily have written (though I'm certain not so fluently!) - like something out of my life, my story, my emotions. Even my coping methods, such as they are, sound very similar.

I rely on hope because it's literally the only way I've found to deal with this illness without emotional collapse - but there are times when that just doesn't wash, and then I find myself drifting further and further away from life ... never mind hope! I guess that's why hope is so important to me. I know what it's like to just not want to live like this anymore. I don't think I've ever wanted to be dead, exactly ... but it comes pretty close to that when you literally can't deal anymore with what's happening to you on a daily basis. So yes, if I want to survive, for my loved one's sake, then I have to MAKE myself find hope and happiness and humour - those things that make us human. And I do worry that sometimes that gives the wrong impression to people.

I actually am a survivor of abuse (though not from BEFORE I got sick - so they can't use that one against me, lol) and I think you're right about how ME feels. Of COURSE you learn not to do those things. I'm walking on eggshells now, just as I was in my marriage - only now it's my own body that I'm afraid of.

Brutal is definitely the word for this illness.

I'm glad you're caring for yourself by stepping back. It's hard to do that - and very brave, I think. I hope that you continue to bounce back without anymore setbacks. I only wish I'd met you sooner!!

Be gentle with yourself! :)

P.s. Wow you get some amazing birds there!! I'm lucky if I get to see a greenfinch. ;)

Laurel - I cannot tell you that I will miss you because I hold you close in my heart so you are never far from me or my thoughts. I know that you know that I am standing in the gap for you, praying for you and cheering you on from the side lines. I will be your personal cheerleader as long as you need me! :-)

While you may not be present on line, I know that you are here in spirit and I am there with you in spirit.

I know pulling back is a difficult decision when all we want is to be part of the world around us.

As that gift reminds you that you are never alone, please reach out whenever you need to. I am always here for you.

I love you and look forward to hearing about your body bouncing back and I look forward to many more artricles and videos in the future.

I also hope you don't mind ... I've tagged you in a meme. The details are on my blog. If you can't do it without taking a hit to your health, don't worry about it. If you feel like giving it a shot when you have more energy, even if that's months and months from now, go for it.

Wow, I am so far behind in visiting blogs that I didn't even realize you were taking a break until Dominique mentioned it. Don't know if you are checking comments once in a while or not...

I completely understand your need for a break. I took a brief break recently - just about 5 days - but I needed to remove the pressure for a while. I know that time on the computer wears me out, and I;m trying hard to set limits for myself, but I always feel like I'm way behind on everything. It's a very difficult balance.

I think you are doing a brave and courageous thing by recognizing your limits and taking care of yourself.

If you do happen to read this, just know that I support you 100%. We'll all be here whenever it feels right for you to return.

Laurel, Here it is - the very day your body requires you to step back from the blogging world - and I just found you. :) I completely understand the need for a recovery time though - and it looks like there are plenty of past posts for me to read when I'm able to. I myself often find that even posting once a week is hard - though I try, because it helps me focus on the good things... when the difficulties of life are often so blatant, I have to purposely set aside time to focus on my blessings... Still, it takes so much energy to put words together - if I write a post, it is likely one of only a few things I'll be able to do in a day...

Wait - I misread the date! :) It's actually been two months since you posted this... LOL! There's some serious brain fog for you! :) In any case, I'm happy to have found this little corner of cyberspace...